A bit lost

A bit lost

Posted by Troyinshawnigan on Apr 24, 2016 5:10 am

I have been chair bound since September 2015. Ì am paralyzed from the waist down due to doctor error A botched lumbar puncture ( by three doctors with over 30 failed attempts). As it took several monthsbfor the numbness and paralasis to spread my family and I have had to figure it out on our own. I now have a diagnosis. It is arachnoiditis. Anyway things have fotten worse at home as I struggle with trying to stay sane and figure out how to continue living. I am so angry at the system as I was self employed with no insurance. I am now trying to meet the same financial obligations on a disability cheque. And now it seems as things dont work on thw besroom thw same way they used to and nees a lot more effort by both my wife and my self she has lost interest. Here is the part that I am having trouble with. I am the same person. And now everyone seems to treat me like either i am breakable or mentally deficient. Anyway it is very late so that is all i have to say for now. Sorry for the rant. I would love some feedback. T

Re: A bit lost

Posted by Bill on Apr 27, 2016 1:50 pm

Hi Troy my name is Bill Cawley and I am the program manager for the  Reeve Foundation's peer mentoring program. I was inured in 1992 and even though that was a number of years ago it isn't hard to remember those days and nights a year or two after my accident.  I had more then my share of "rants"

Things can and will get better and reaching out is a very important first step.  I would be more then happy to connect you with one of our staff who can help arrange a peer mentor for you. We may even have one in your area.  It is a quick and easy process  

If you would like too talk to a peer mentor you can email me at peer@christopherreeve.org or leave a post here- I will check back.  I will need some contact info so you may want to email us..

Our peer mentors have been where you are and I truly believe we can help.

Take care and good luck,

Re: A bit lost

Posted by Dan Gottlieb on Apr 27, 2016 2:10 pm

hi Troy,

Dr. Dan Gottlieb here. It seems you have come to the right place. Bill Crawley is a great resource and can help you get a phone contact who might know some resources in your area.  This webpage in general has tons of rich information also.

As I listened to you, it sounds like you have lots of issues going on, not the least of which is trying to figure out a way to live with this new body that doesn't work as well as the old one. I also hear a great deal of anger over what happened to you-and maaybe a sense of isolation.And then there are the very serious financial concerns

there are many things you are going to have to do in the short run. But remember, you are a man with a body and a wife all of home have suffered and still suffer with this life altering trauuma. I sure hope you and your wife are on the same page as that can make a great difference in the quality of both of your lives.

Anger is understandable. Most of us have experienced. Many of us, myself included,, have had violent fantasies about getting even with those who may have harmed us. It's a normal reaction to injustice. And anger is part of a process that may take a while to get through.

But eventually you will wake up one day and in so many words say "holy crap, this sucks. Now let's figure out how to live a life I can feel good about."

I have a live web chat with the Christopher Reeve folks once a month on a Wednesday. Our next one is this coming Wednesday at 3 PM. Our topic is about relationships, but people usually call in and  talk about whatever is most pressing in their lives.

I hope to meet you next Wednesday. But if not, join me on my discussion group: "Dr. Dan on well-being"

I look forward to meeting you


Re: A bit lost

Posted by Troyinshawnigan on May 1, 2016 4:15 am

Thank you for your reply. I read this and felt a whole lot less alone. I will be in touch by email

Re: A bit lost

Posted by Dan Gottlieb on May 1, 2016 5:25 pm

and I look forward to connecting with you also. I am hoping you can make our web chat this Wednesday at 3 PM Eastern time?
just in case you forgot my email address,


Take care of you


Re: A bit lost

Posted by Bill on May 2, 2016 9:43 am

HI Troy,

I am glad my note helped some. 

As I mentioned I put a post in our priivate FB page and got a few ideas to try to help allevite pain from our mentors I wanted to share.  They sugggested look into 

Medical Cannabis
Heat packs
Cold packs
Strectching/ Yoga

 I will keep an eye out for your email.  Here is the email address again for your reference, peer@christopherreeve.org.

Take care,

Re: A bit lost

Posted by Bill on May 10, 2016 11:06 am

Hi Troy,

How are you? Did you get a chance to try any of our mentor's suggestions? Did they help?

If you want to take to a peer mentor just let me know.  You can email me at peer@christopherreeve.org.

Take care, Bill 

Tag Topic

Subscribe to Topic

Would you like to be notified of updates to this Discussion Topic? Subscribe and you'll receive email updates of new posts.